CELEBRATING BUFFALO TOGETHER#TOTALLY BUFFALO

To say the Rink family has had a tough year – might be the ultimate understatement.

In August of 2017, Pat Rink was diagnosed with metastatic Melanoma. He had surgery to remove the lesion, about 3 1/2 inches on all sides of the lesion, and part of his calf muscle. He then received IV immunological treatment.

In October of 2017, just two months later, Pat and Jessie Rink’s 2-year-old son, Judson was also diagnosed with cancer. The little guy started wheezing and what was diagnosed as asthma turned out to be much worse: a tumor in the toddler’s chest. Further testing confirmed the unthinkable: their precious little boy had T-cell Lymphoblastic Lymphoma.

It was devastating news, “It was, it’s hard to explain but then I kind of, the first thing I did was research as much as I could,” Jessie recalls, “I was on my phone in the hospital trying to understand it.”

The young mom said the news was awful but she focused on the fact that the prognosis seemed good. She kept going back to the statistics that showed the 80-90 percent cure rate. That was just the beginning of a horrifying road, “It’s so much more of a journey, all the damage the chemo does and how horrifying the whole road to get there is, it’s awful.”

It was the beginning of a whole new world, a new way of life, a new normal that continues today.

He did really well initially, but soon, Judson’s tiny body was struggling. He’d become unable to fight off infection. There were a series of hospitalizations, including in June – for his third birthday. He’s was at Oishei Children’s Hospital for six long weeks. It started as a low grade fever and ended with respiratory distress.

Judson is still fighting that infection in his lungs. He’ll have another CT scan in coming days and the Rink’s are hoping the infection is gone or at least starting to go away.

One of the most difficult things for Jessie is watching other 3-year-old kids running, jumping and having fun just being a child. Judson asks to go to the playground – something he simply can’t do right now – the way his immune system is, it would be just too dangerous, “It’s hard for him to understand why he can’t do the things he used to do and what other children are doing.”

Six-year-old Charlotte understands a bit of what is going on with her little brother. She certainly understands moving to a new home recently. Jessie said they had to downsize due to overwhelming expenses facing her family. It’s their new world, new life, new home, new normal.

There are a few things Jessie hopes you take away from her family’s story.

THE TREATMENT

“When you look at the cure rate – yes, we have these drugs that will kill the majority of these cancers. The drugs are life-saving, but it’s incredibly frustrating because I think wow, how far can you push him safely with these drugs and still be curing him. If we could develop drugs geared to children it would make such a difference. I mean, these drugs will hopefully cure him, but the reality is, there is a very good chance he will have life-long health effects from them.”

YOU ARE YOUR CHILD’S ADVOCATE

“You are your child’s advocate and at the end of the day health providers are going to go with what makes the most sense to them. That’s how it works. I would have said it was asthma, too. But, as a parent you are living with the child, so you know. If you know or think you know, say it and just don’t stop. Be your child’s voice.”

THE JOURNEY

“The journey is long. We had to skip a more aggressive phase of chemo, so he is playing catch-up now. His plan, as of now, is to go through February of 2020. It’s a long road and the scariest part came two months ago and had nothing to do with his cancer, but everything to do with his treatment.”

GRATITUDE

“Of all the bad that has come out of it, there’s a tremendous amount of good. There are so many people who just want to help. People who can’t help but drop a note in the mail to me with kind words. It means so much.”

Jessie is also incredibly grateful for organizations that have helped beyond words – like the PUNT Fund who helped make a mortgage payment when there was just no money to do so.

The journey for Judson is long. The emotional, physical and financial toll on this family is unimaginable. The battle will be long-term, maybe even life-long for Judson.

September is pediatric cancer awareness month. It’s a time to shine the light on this terrible fight that children are facing. You can help, too – by sharing stories and donating time and money to charities that help children and their families.

Reach out to your elected leaders and tell them we want change. Tell them our kids are worth it. Tell them to stop wasting money on nonsense in our government – and put that money to the best possible use; the future of this great country – the children who will lead the way.

The National Cancer Institute – which controls billions of dollars and releases a fraction of its resources to specifically help children with cancer is taxpayer-funded – which means that our voice counts. This is why you have to call or write to your elected leaders and tell them to give these children more than four.

Following my heart with my husband and four daughters. An Emmy Award winning journalist lucky enough to work in television & radio for 20 years -seeing wonderful places, meeting great people and telling their stories.

Mary Friona

Following my heart with my husband and four daughters. An Emmy Award winning journalist lucky enough to work in television & radio for 20 years - seeing wonderful places, meeting great people and telling their stories.

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About Me

Welcome to Totally Buffalo! My name is Mary Friona-Celani and I am the creator of this site! After spending 20 years in the Buffalo media, I moved on to focus on my beautiful family. Now, the time has come for a new project. I was ready for something new. Something mine.
I am born and raised in WNY and my pride runs deep. My husband, Scott and I are very happy to be raising our four daughters here.Mary's Blog